31 for 21: Circling the Wagons

There is so much talk of awareness...but seriously, sometimes you have to circle the wagons for something as soon as you understand.  Today, I am sharing two of these things.  I don't really care if it's not Down Syndrome. 

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Sometimes one thing leads to a whole world...  when my daughter was born, I learned about a parallel universe.  Now, mind you, I worked in the inclusion education world.  I knew many of the battles that happened in the hours of school, I was engaged, and I fought, in principle and in fact...but while those are important battles, the bigger and more overwhelming battle is every day life.

I read this and was seriously ready to go to war.  I mean, for serious, right then:
http://liferearranged.com/2013/09/coaches-columnists-epilepsy-facts/

And then this week, Jeanett gave us a way to fight.  1 in 26 people are affected by epilepsy.  We can donate for research, awareness, and education; so it isn't full of the stigma that this ignoramus would lead us to believe.  And I am pleased to report, that, boy howdy, is Team Jilly fighting!!  Please join us!
http://liferearranged.com/2013/10/our-roller-coaster-epilepsy/

Educate yourself:
http://liferearranged.com/category/epilepsy/


NOW, again, Elise's best friend is Megan.  She has Mitochondrial Disease.  This is one of the most brutal diseases I know, it takes your child from you.  Slowly, painfully, and sneakily.  And it terrifies me, hurts me, and makes me want to come alongside in a meaningful way.  I am proud to link you to one of my best friends who "got it" and wrote this within weeks of meeting Megan's mama, my friend Laura:  http://rixie4.blogspot.com/2013/09/actually-aware.html   

This is why "awareness" weeks, months, and whatever are so important.  Because sometimes you don't know to raise your voice, volunteer, donate, offer relief, and bring meals, if you don't know what is going on.

Cancer Thoughts....

In previous years, I have addressed September as Childhood Cancer Awareness Month.  I have celebrated the fact that Elise is with us, and the people we have met along the way.  I still am thankful for my Elise having beat this monster disease.  And I would like to "reshare" some of those thoughts.

http://superdownsy.blogspot.com/2012/09/childhood-cancer-awareness-repost-1.html

http://superdownsy.blogspot.com/2012/09/why-cancer-can-be-sweet-series-1-repost.html

http://superdownsy.blogspot.com/2012/09/cancer-free-anniversary-and-repost.html

http://superdownsy.blogspot.com/2012/09/why-cancer-can-be-sweet-3-repost.html

http://superdownsy.blogspot.com/2012/09/why-cancer-can-be-sweet-4-repost.html

I have also, in person, shared how important all the fundraising is for Childhood Cancers, because the public funding and allotments are so stingy with Childhood Cancer  research and support.  Like, shamefully disproportionate:

The American Childhood Cancer Organization says "Cancer will be funded in 2009 at a level of approximately $5.6 Billion. In 2007, the NCI reported that the combined extramural and intramural funding for childhood cancer research was approximately $180 million. However, this estimate could be regarded as liberal as some of the associated research might not be perceived as directly benefiting childhood cancer. Other more conservative estimates, put childhood cancer research funding as low as $30 million annually."  And other research groups that focus on Childhood Cancer, estimate very similar numbers.

The bare bones Childhood Cancer statistics are here:
http://www.acco.org/information/aboutchildhoodcancer/childhoodcancerstatistics.aspx

and here:
http://www.theatlantic.com/health/archive/2013/01/our-disproportionate-focus-on-adult-over-pediatric-cancer-research/266684/

For me, I look back at the kids that I know personally that have been lost.
Hayley
Maddy
Annette
Jack
Catie
Will
Lana Beth
Daniel
Amanda
Madison
Jill

And the hard thing for me and, most especially, their parents, is: "If research had gotten decent funding, could they have had the One Thing that would have helped them beat it?"

As many people before me have said, people in the position to allocate funds answer to adults, not kids.  So you know how "awareness" helps?  Now you know to ask.  Now you know to do all the fundraising 5ks.  Now you can donate time, money, or toys.  Now you know that we need you.

Please research any group you choose to give to.  Make sure that they are transparent in the allocation of funds.  Make sure you hold them to accountability.

Personally, we were touched by Cure Childhood Cancer, here in Atlanta.  I know for a fact, that they were heavily financially involved in supporting one Elise's doctors' research.  I know that they are funding research in long-term effects of chemo and cancer treatment drugs and protocols at the group that has handled all of Elise's treatments and follow up medical involvement.  I am sure that they were also involved with the experimental treatment that Elise received and that now is the new treatment protocol for all kids with Down Syndrome who are diagnosed with AML here in Atlanta.

Cure Childhood Cancer, also provided Thursday Night Meals for families undergoing inpatient treatment.  We looked forward to each Thursday as a break from hospital food.  More than that, though, it was an emotional release from the oppression of the sameness, and they gave the knowledge that there was someone out there that cared and hadn't forgotten us...or gotten tired of our emotionally draining updates.

I have been impressed with their transparency and their commitment:
http://www.curechildhoodcancer.org/about-cure/

But the thing you need to know, is that even if a child fights and wins, it never really goes away.

Elise not only had to battle cancer, but she is dealing with increased mental impairment because of the very chemo that saved her life.  We know this, because nobody dodges this.  The most common side effect of any chemo that I have seen is the inability to organize and process thoughts like before, in varying degrees.  And in the face of every single IEP at school and every story of children with Down Syndrome who are successful and perform on par with typical peers, I wonder again how much Cancer took from her.  Because of the damage the chemo did to her body while killing the cancer cells, she also lost a year's worth of interventional therapy.  In all areas, Physical, Occupational, and Speech, because she was too tired to grow and progress.  And we are still seeing the loss.

Why families who have lost kids fight passionately, most people understand.  They miss their child, and want to honor their baby's memory to help other kids NOT lose.  The ever popular "F U Cancer" indicates just how unending the battle is. 

Those who have battled and made it?  We fight because we lost kids who we "playdated" in the halls during treatment.  We fight because we feel guilty to have won, with nothing more to recommend us than anybody else.  We fight because we know how brutal the path is.  We fight because we fight the long-term effects every single day.  We fight the heart damage, the mental impairment, the systems failures, the lung damage, the liver damage, the secondary cancers, and the chronic fear.

We fight, because it is never over.